According to the World Health Organization (WHO), people with disabilities – that is, people with physical, sensory, intellectual or mental health disabilities – make up 15 per cent of the world’s population.[i] Yet when attention is focused on indigenous or minority issues, the situation of those living with disabilities within those communities is rarely considered. Too often, members of indigenous and minority populations who live with a disability, and their families, find themselves struggling to meet the competing needs and challenges of their identity within often marginalized communities and the demands of living with a disability. People with disabilities in indigenous and minority communities represent a group often overlooked, yet who have much to contribute to their communities and to the broader society.
Background
In many ways, disability is a key cross-cutting issue that frequently is overlooked even by those who work on cross-cutting issues. Disability is considered – if it is considered at all – as a medical concern to be described and discussed within realms of clinical medical and public health. This ‘medical model’ has been replaced over the past 20 years, however, by an emerging ‘social model’ – the realization on the part of policy makers, organizations and advocates that the key barriers facing people with disabilities worldwide are not their health or rehabilitation needs, but poverty, social exclusion and injustice.[ii]
Indeed, the new UN Convention on the Rights of Persons with Disabilities,[iii] now signed by 160 countries, specially speaks to the broad nature of disability when it describes disability itself as ‘an evolving concept’ and states that ‘disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others’.[iv]
Disability never constitutes anyone’s full identity however – all people who are born or who become disabled are also members of other cultural and socio-economic groups. The intersectionality between disability and other groups that face discrimination has come under increased attention in recent years, but we still know relatively little about many aspects of living with a disability within groups that face poverty, prejudice and social marginalization.
Certainly within indigenous and minority communities, the issues faced by children and adults with disabilities – and their families – is of particular concern. Many of these communities already face disproportionate levels of poverty and are less likely to receive equal access to resources or services such as education or health, that are available to non-indigenous populations in the same community or country.
Here there is a compounding set of issues that makes the lives of people with disabilities of particular concern, both within and beyond the community. Many of these issues are interlinked. For example, even in very poor communities, people with disabilities and their households are more likely to live in poverty than their non-disabled neighbours. This has more to do with lack of access to resources throughout the life cycle – people with disabilities are less likely to attend school, be able to get a job, and are less likely to be permitted to participate freely in the social, economic and political life of their communities. In those indigenous and minority communities where members live in hard-to-reach remote rural areas or in urban slum communities, access becomes harder still.[v]
Compounding this, in many traditional communities, there are beliefs about how and why certain children or adults become disabled that promote social isolation, stigma and discrimination against the individual and their family. It is important to note that such belief systems will differ by indigenous or minority group and by type of disability – and some traditions have positive and supportive attitudes towards disability. For example, in some traditional communities, children and adults who have epileptic seizures may be perceived as being in closer touch with ancestors, gods or the afterlife.
Moreover, in many indigenous or minority communities where there is great need, people with disabilities are often encouraged or told to wait to ask for or demand access to resources by members of their own communities. ‘We will get help for our disabled children,’ an elder chief of one Native American community told this author, ‘once our other children are provided for.’ What this attitude overlooks is that disability rights are inseparable from other human rights, and all children’s lives – including the lives of children with disabilities – are of equal value. Asking children with disabilities and their families to wait until an undefined point in the future as a contribution to the broader needs of an indigenous or minority community means that progress is delayed for all.
Nor is poverty alone an issue. Due to poverty, less access to health care, poor working conditions and gender-based violence, women are at higher risk of becoming disabled than men, and may make up as many as three-quarters of all those with disabilities in low- and middle-income countries.[vi] And as populations age, the number of people aged 60 and above living with disability grows. This growth is taking place in two distinct groups: people disabled at birth or in adulthood, familiar with disability, who, with improved medical care, are now surviving into older age; and people who become disabled as a result of illness or injury in old age. Members of indigenous and minority populations are at increased risk of becoming disabled as they age, due to poverty, lack of access to adequate medical care, housing or nutritious food, and violence in areas in which they live. For example, in the United States, African Americans are more likely to be disabled throughout the life cycle, with black/white differences peaking in midlife (50–69 years of age), and African Americans being between 1.5 to 2 times as likely to live with a disabilities as their white peers.[vii]
All these issues have specific implications when disability intersects with indigenous or minority community concerns. Lack of opportunity and destruction of traditional community beliefs and practices has led to high rates of alcohol abuse in a number of indigenous and minority communities, for instance, causing the routine birth of children with foetal alcohol syndrome (FAS), which leads to non-reversible and often significant developmental delays. In the United States,[viii] while the prevalence of children born with FAS will vary from tribal group to tribal group and within many tribal communities, ‘the prevalence of FAS in Alaska is 5.6 per 1,000 live births for American Indians/Alaska Natives, compared to 1.5 per 1,000 in the state overall.’[ix]
And of course, many issues related to disability can be compounded not just in one but in several domains. For example, an impoverished older LGBT (lesbian, gay, bisexual and transgender) woman from a rural indigenous or minority community who is disabled faces not one, but a series of challenges and barriers that have direct implications for her ability to live on a daily basis and plan for a future.
Into the future – key concerns and potential options
Rethinking disability – moving the issue from a medical concern to a human rights and international development issue – has been slow in coming. But within the past decade changes are beginning to occur rapidly for people with disabilities at both national and international levels. And these changes have direct implications for people with disabilities in indigenous and minority communities.
The Millennium Development Goals, written in 2000, unfortunately overlooked disability entirely – there was no mention of disability in any of the Goals, Targets or Indicators. Yet the United Nations (UN) Convention on the Rights of Persons with Disabilities, the first human rights treaty of the twenty-first century, which entered into force in 2008, has now established critical parameters for inclusion of persons with disabilities within all legislative and development efforts. The 160 countries which have currently signed or signed and ratified this Convention have recently or are now in the process of rewriting all their national laws and policies to comply with the Convention.
This new emphasis on ensuring rights for all people with disabilities is further reflected in the new Sustainable Development Goals,[x] which implicitly, and in several Targets explicitly, includes people with disabilities throughout. This emphasis on ensuring inclusion for all is emphasized in the strapline for the Goals themselves: ‘Leave No One Behind’.
While all these efforts are admirable, there is concern that people with disabilities in indigenous and minority communities may benefit less, or not benefit at all. Poverty, marginalization and lack of information about disability rights within these communities, as well as competing priorities within indigenous and minority communities in combination with traditional beliefs and practices, may make accessing new rights and resources more difficult for disabled members of these populations.
Very significantly, a small but growing number of people with disabilities within indigenous and minority communities are now stepping forward themselves to have their concerns heard – both within and beyond their own communities.[xi] Indeed, national coalitions of indigenous and minority people with disabilities are increasing. For example, in Australia the First Peoples’ Disability Network, founded in 1999, is a national coalition of Aboriginal and Torres Strait Islanders with disabilities who advocate about indigenous and disability issues.[xii] Balancing both the concerns of indigenous communities and people with disabilities, as well as issues specifically concerning indigenous people with disabilities, such organizations are a distinctive voice on behalf of both indigenous and minority groups, and the disability rights community.
In summary, a growing body of research and advocacy tells us that when people with disabilities are able to participate fully and freely in their communities – and are able to have equal access to the support, inclusion and resources available – all members of the community benefit. All groups and advocates working within or on behalf of indigenous and minority communities must not forget to include these millions of children and adults in all the policy, programmes and advocacy work they undertake.
Nora Ellen Groce
[i] World Health Organization (WHO)/World Bank, World Report on Disabilities, Geneva, WHO, 2011, retrieved February 2016.
[ii] Groce, N., Kett, M., Lang, R. and Trani, J.F., ‘Disability and poverty: the need for a more nuanced understanding of implications for development policy and practice’, Third World Quarterly, vol. 32, no. 8, 2011, pp. 1493–513.
[iii] UN Convention on the Rights of Persons with Disabilities, New York, United Nations, retrieved February 2016,
[iv] Ibid., Preamble (e).
[v] WHO/ World Bank, op. cit.
[vi] European Women’s Lobby, ‘Women more prone to disability than men, and particularly vulnerable to discrimination and violence’, 2011, retrieved February 2016, www.womenlobby.org/Women-more-prone-to-disability-than-men-and-particularly-vulnerable-to
[vii] Nuru-Jeter, M., Thorpe, R. and Fuller-Thomson, E., ‘Black–White differences in self-reported disability outcomes in the U.S.: early childhood to older adulthood’, Public Health Reports, vol. 126, no. 6, 2011, pp. 834–43.
[viii] ‘Fetal Alcohol Spectrum Disorders among Native Americans’, factsheet, UN Department of Health and Human Services Substance Abuse and Mental Health Services, Administration Center for Substance Abuse and Prevention, retrieved 10 February 2016.
[ix] ‘Fetal Alcohol Spectrum Disorders among Native Americans’, factsheet, UN Department of Health and Human Services Substance Abuse and Mental Health Services, Administration Center for Substance Abuse and Prevention, retrieved 10 February 2016.
[x] The Sustainable Development Goals, New York, United Nations, 2015, retrieved February 2016.
[xi] See, for example, Hollinsworth, D., ‘Decolonizing Indigenous disability in Australia’, Disability & Society, vol. 28, no. 5, pp. 601–15, retrieved 15 February 2016.
[xii] First Peoples Disability Network Australia.
Photo: African American young people reading using braille. Credit: NASA HQ.
